October was a month of connection, advocacy and scientific progress across the FH Europe Foundation community. From patient voices shaping discussions at international conferences to new research, awareness initiatives and preparations for the Annual Network Meeting in Dublin, our network continued to advance patient-centred care and cardiovascular prevention.
Catch up on the key highlights from the October 2026 edition of Heart Beat:
FH Europe Foundation is sharing an official communication from Novartis concerning the discontinuation of its pelacarsen development programme. We also provide background on the Lp(a)HORIZON announcement and outline how FHEF is independently engaging with its community and scientific experts to support informed discussion and next steps.
On 16 October 2026, FH Europe Foundation (FHEF) received an official communication from Novartis, addressed to patient organisations and patient advisors, concerning the company's decision to discontinue the pelacarsen clinical development programme for atherosclerotic cardiovascular disease.
In its letter, Novartis acknowledges the disappointment this decision may cause among patients, families and those who contributed to the research. The company also confirms that the detailed findings from the Phase III Lp(a)HORIZON clinical trial will be presented at the American Heart Association Scientific Sessions in November.
At Novartis's request, FHEF is sharing the company's official communication with the wider patient community. The letter is provided in its original form and reflects Novartis's own position and decisions.
Read the official Novartis Patient Community Statement – 16 October 2026
On 4 September 2026, Novartis announced the topline outcome of its Phase III Lp(a)HORIZON clinical trial. The trial involved 8,323 people with elevated lipoprotein(a) [Lp(a)] and established cardiovascular disease, who were already receiving guideline-directed treatment. It investigated whether lowering Lp(a) with pelacarsen could reduce cardiovascular events. According to the company's announcement, pelacarsen lowered Lp(a), but the study did not meet its primary composite cardiovascular endpoint. Importantly, no detailed clinical trial results have yet been publicly presented. The September announcement communicated the topline outcome only. The detailed findings are scheduled to be presented on 7 November 2026, during the American Heart Association Scientific Sessions.
On 7 September 2026, following the Novartis announcement, the Lp(a) International Task Force (ITF), chaired by Prof. Florian Kronenberg and supported by FHEF as its Secretariat, issued an independent scientific statement. The ITF emphasised that the complete trial data, including individual cardiovascular outcomes and relevant subgroup analyses, must be examined before definitive scientific conclusions can be drawn. Importantly, the Task Force reaffirmed that elevated Lp(a) remains a well-established, genetically determined cardiovascular risk factor.
The outcome of this individual trial does not change the importance of Lp(a) testing, early identification of inherited cardiovascular risk and comprehensive prevention.
Read the Lp(a) International Task Force statement – 7 September 2026
Following receipt of the Novartis letter, FHEF took the initiative to convene a dedicated online discussion with its Lp(a) Ambassadors and Patient Council representatives, including people who had participated in the Lp(a)HORIZON trial. Prof. Florian Kronenberg, Chair of the Lp(a) International Task Force, joined the discussion to provide scientific perspective and respond to questions. The discussion provided valuable insights into the information, support and engagement that matter most to people living with elevated Lp(a), particularly those who have contributed to clinical research.
Several priorities emerged:
These discussions reinforced the value of meaningful patient engagement throughout clinical research and the importance of working together to improve communication, understanding and trust.
NOTE: Communication with clinical trial participants
Under international Good Clinical Practice, communication with individual clinical trial participants is generally managed through investigators and clinical trial sites. Investigators are responsible for promptly informing participants when a trial is terminated or suspended and ensuring appropriate medical care and follow-up.
Sponsors have separate responsibilities for communicating with investigators, institutions and regulatory authorities. Direct communication between sponsors and individual participants may also be subject to consent, confidentiality and data protection requirements.
FHEF provides this general information to help clarify the established communication process.
The detailed results of the Lp(a)HORIZON trial are scheduled to be presented on Saturday, 7 November 2026, during the American Heart Association (AHA) Scientific Sessions in the United States. These findings will be important for understanding the trial outcome, including the observed cardiovascular effects, the individual components of the primary endpoint and relevant subgroup analyses. Until these data are publicly available and independently assessed, it remains premature to draw definitive conclusions about the implications for Lp(a)-lowering therapies more broadly.
Beyond sharing the Novartis communication, FHEF has brought together its Lp(a) Ambassadors, Patient Council representatives and scientific experts, and is taking further steps to facilitate dialogue with other relevant stakeholders. These activities reflect our ongoing commitment to supporting people living with elevated Lp(a) and their families through reliable information, meaningful dialogue and patient-centred advocacy.
Following our discussions with Ambassadors, Patient Council representatives and scientific experts, we have identified the following priorities:
The developments and their broader implications for clinical research, innovation and patient involvement will also inform discussions at the FH Europe Foundation Annual Network Meeting 2026 in Dublin, 6–8 November.
Details of the public webinar, including its date, speakers and registration, will be shared through FHEF's communication channels.
The announcement concerning Lp(a)HORIZON has understandably generated disappointment and uncertainty, particularly among people who participated in the trial and those awaiting new treatment options. Nevertheless, elevated Lp(a) remains an important inherited cardiovascular risk factor. Knowing one's Lp(a) level can help inform cardiovascular risk assessment and personalised prevention strategies.
FHEF and the Lp(a) International Task Force remain committed to advancing awareness, early detection, evidence-based cardiovascular prevention, meaningful patient involvement in research and equitable access to care.
For FHEF, the priority is to ensure that people living with elevated Lp(a) are informed, heard and meaningfully involved in the discussions that affect their health and future.
FH Europe Foundation joined international cardiovascular and metabolic health experts at the 14th proCardio symposium in Basel, bringing the patient perspective into discussions on scientific innovation, early detection, integrated care and health policy.
What initially appeared to be a highly specialised scientific meeting turned out to be an exceptionally informative, thought-provoking and relevant forum for FH Europe Foundation (FHEF).
Organised by Roche Diagnostics at its headquarters in Basel, Switzerland, on October 7-8, the 14th international proCardio symposium brought together approximately 150 clinicians, researchers and international experts to explore advances in cardiovascular diagnostics, biomarkers, treatment strategies and prevention. This year's programme focused on cardiovascular-kidney-metabolic (CKM) syndrome, recognising the interconnected nature of cardiovascular disease, diabetes, obesity, kidney disease and other cardiometabolic conditions. For FHEF, the meeting offered an opportunity to explore developments beyond inherited lipid disorders, engage with experts across medical specialties and demonstrate the contribution of patient organisations to science, prevention and health policy.
One of the central messages emerging from proCardio 2026 was the need to move beyond traditional disease-specific approaches. Cardiovascular, kidney and metabolic conditions frequently coexist and share common risk factors and biological pathways. Yet healthcare systems and clinical specialties often remain organised around individual diseases. The scientific programme illustrated why more integrated approaches are needed, particularly for people living with multiple conditions or overlapping risk factors. Across two days, leading international experts explored advances in cardiovascular risk assessment, heart failure, diabetes, obesity, hypertension, kidney disease and early detection.
Among the programme highlights:
For people living with inherited lipid disorders, this broader perspective is particularly relevant. Genetic risk does not exist in isolation, and understanding how it interacts with other cardiovascular and metabolic factors is essential to more personalised prevention and care.
The discussions also highlighted a recurring challenge: despite remarkable scientific and technological advances, translating evidence into routine clinical practice remains difficult. Access, reimbursement, professional education and integration into existing care pathways are all critical to ensuring that innovation benefits patients.
FHEF CEO Magdalena Daccord participated in the symposium, contributing the patient organisation perspective to discussions largely led by clinicians and researchers. Being significantly outnumbered by medical experts while discussing advocacy, prevention and health policy was an interesting experience! Questions about what patient advocacy organisations actually do also served as a reminder that the contribution of organised patient communities is not always fully understood. Yet this is precisely why their participation in scientific forums matters. Patient organisations do much more than raise awareness or share personal experiences. They identify unmet needs, shape research priorities, contribute to evidence generation, connect stakeholders, support health literacy and advocate for changes in healthcare policies and practices. They also bring expertise grounded in the realities of living with a condition, navigating healthcare systems and understanding the barriers faced by patients and families. Meaningful patient involvement is not simply about having a patient representative in the room. It is about recognising patients and advocates as contributors to scientific, clinical and policy discussions.
The symposium concluded with a panel discussion entitled “Beyond the Clinic: How CKM Research and Lived Experience Shape Health Policy Agendas.” Moderated by Manjusha Chatterjee of Global Heart Hub, the panel brought together Professor Christie Ballantyne, Dr Berkan Kurt and Magdalena Daccord to explore how scientific evidence, clinical expertise and lived experience can inform health policy. Drawing on FHEF's experience, Magdalena highlighted the journey from patient-identified unmet needs to international advocacy, scientific collaboration, health-economic evidence and European policy developments. The work of the Lp(a) International Task Force, the Brussels International Declaration on Lp(a) Testing and Management, and the international cost-effectiveness study of Lp(a) testing in primary prevention provided concrete examples of this process. These initiatives form part of a broader effort to improve the recognition and management of elevated Lp(a), a common but frequently overlooked inherited cardiovascular risk factor. The discussion also addressed important recent European policy developments. The EU Safe Hearts Plan, published in December 2025, recognises inherited cardiovascular risk, including familial hypercholesterolaemia (FH) and elevated lipoprotein(a) [Lp(a)], within its prevention and early detection agenda. This was followed by the European Commission's 28 September 2026 proposal for a Council Recommendation on cardiovascular health checks, which specifically addresses Lp(a) testing. For the patient community, these developments represent important progress. However, European policy recognition is not the same as national implementation. National policymakers, healthcare systems and clinical communities must now determine how recommendations can be translated into accessible testing, appropriate risk assessment, follow-up and care. Scientific evidence also continues to evolve. Outcomes from cardiovascular clinical trials, including those investigating Lp(a)-lowering interventions, may influence future clinical recommendations and policy decisions. The next challenge is to turn growing scientific knowledge and European policy recognition into meaningful and equitable prevention pathways.
Beyond the presentations, proCardio offered valuable opportunities to exchange perspectives with experts working across cardiovascular, kidney and metabolic health. For FHEF, engaging with cardiologists, diabetologists, nephrologists, primary care professionals and researchers beyond the traditional lipidology community opened new possibilities for collaboration. It also reinforced the importance of bringing different forms of expertise together, including those of patients and advocates, when developing research priorities, diagnostic approaches and healthcare strategies. The symposium demonstrated that innovation is not only about new biomarkers, diagnostic technologies or treatments. It is also about how we collaborate, recognise different forms of expertise and translate knowledge into better health outcomes.
From scientific lectures to community health checks, FH Europe Foundation Ambassadors helped connect the latest evidence in lipidology with the realities of living with inherited lipid disorders.
What happens when people living with inherited lipid disorders and their caregivers are invited not simply to attend a scientific meeting, but to become part of its educational programme alongside leading international experts? At the 6th Lipid School in Split, Croatia, FH Europe Foundation (FHEF) witnessed a remarkable example of meaningful patient involvement in medical education. For the first time, FHEF Patient Ambassadors were integrated as speakers throughout the scientific programme, bringing lived experience directly into discussions on inherited lipid disorders alongside leading clinicians and researchers.
Organised by the Croatian Atherosclerosis Society of the Croatian Medical Association, the School took place from 15 to 18 October 2026 at the Mediterranean Institute for Life Sciences. It brought together almost 60 participants, including international medical and pharmacy students, young researchers and clinicians, and renowned Croatian and international experts in lipidology, cardiovascular prevention, diabetes, obesity and cardiometabolic health. Among the faculty were several members of FHEF's Scientific Advisory Committee and long-standing scientific collaborators.
The organisers deserve particular recognition for embracing patient expertise as an integral part of medical education. FHEF Ambassadors contributed in person and through prerecorded presentations, sharing their experiences of living with heterozygous familial hypercholesterolaemia (HeFH), homozygous familial hypercholesterolaemia (HoFH), elevated lipoprotein(a), familial chylomicronaemia syndrome (FCS) and lysosomal acid lipase deficiency (LAL-D), including the perspective of a parent and caregiver.
The scientific sessions addressed the latest evidence, diagnostic approaches, clinical guidelines and emerging treatments. The Ambassadors complemented this knowledge with something that cannot be found in clinical trials, laboratory results or treatment algorithms alone: the realities of everyday life. They spoke about delayed or missed diagnoses, the impact of inherited conditions on families, the challenges of managing treatment over a lifetime, the emotional burden of uncertainty, the importance of accessible and understandable information, and the hopes and expectations people bring to their healthcare. Their contributions were personal, sometimes emotional, always authentic, and offered a wider perspective on what it means to live with an inherited lipid condition.
For future clinicians and researchers, these are important lessons. Knowing how to diagnose or treat a condition is essential. Understanding the person who lives with it is equally important.
The programme provided a particularly valuable opportunity to connect individual experiences with the scientific subjects being discussed.
In the session “Lp(a): From Risk to the Patient”, Neeraja R. Venu, FHEF Lp(a) Ambassador, shared her perspective alongside scientific presentations addressing cardiovascular risk, laboratory diagnosis and management. Her contribution reinforced why identifying elevated Lp(a) is not simply a matter of obtaining a laboratory result. People need to understand what that result means for their health, their families and the decisions they may face throughout life.
The session “HeFH: Find Early, Treat Early” brought together clinical discussions on cardiovascular risk and national screening approaches with a patient contribution from Edwin Kaal, FHEF HeFH Ambassador. His lived experience helped connect the importance of early identification with the practical realities of diagnosis, family screening, treatment and long-term care.
The Lipid School also provided an important opportunity to explore rare and complex inherited lipid disorders. Bringing together people living with, or caring for someone affected by, three exceptionally rare inherited conditions – HoFH, FCS and LAL-D – created a unique learning opportunity. With prevalence estimates varying considerably across these conditions, many healthcare professionals may rarely encounter affected individuals in clinical practice, let alone hear their experiences together in one scientific programme.
During the session dedicated to FH screening and prevention, Elsie Evans, FHEF HoFH Ambassador, shared her perspective on living with one of the most severe forms of inherited hypercholesterolaemia. Her contribution highlighted the importance of early diagnosis, timely access to specialist care and appropriate treatment, as well as the realities of managing a serious inherited condition throughout life.
During the session on triglycerides, residual cardiovascular risk and cardiometabolic disease, Sabina Škorić and Michelle Sibley shared their experiences in a joint contribution entitled “How FCS Has Shaped My Life.” Following the scientific presentation on FCS , they brought the discussion back to the practical and emotional realities of living with FCS. For people affected by this rare condition, managing health can require constant attention to food, daily routines and the consequences of severe hypertriglyceridaemia, including the risk of acute pancreatitis. The effects extend well beyond clinical measurements, influencing family life, relationships, social activities and emotional wellbeing.
Eduardo López, LAL-D patient advocate, complemented the scientific presentation on lysosomal acid lipase deficiency with his experience as a father and caregiver of a child diagnosed with this rare condition. Often confused with FH, mixed dyslipidaemia or more common liver conditions, LAL-D can be challenging to diagnose. Eduardo described the lack of information and support his family faced and how this inspired him to establish a patient organisation to help others navigating similar challenges.
Together, these Ambassador contributions demonstrated why rare and complex lipid disorders must be considered beyond laboratory values alone. They highlighted the importance of listening to patients and caregivers, recognising atypical presentations, improving diagnostic pathways and ensuring that scientific progress translates into timely, personalised and equitable care.
Patient involvement was also central to the session “Policy, Advocacy & What Can We Do?” Iva Prgomet, representing the Croatian Association of Patients with Dyslipidaemia, presented “From a Personal Story to a Movement for Health”, demonstrating how lived experience can become a powerful force for awareness, education and community mobilisation. Magdalena Daccord, CEO of FH Europe Foundation, followed with “The Role of Patients in Making Inherited Lipids Part of the Safe Hearts Plan.” Her presentation explored how patient organisations and advocates have contributed to bringing inherited lipid disorders, including FH and elevated Lp(a), into European cardiovascular health policy.
Drawing on FHEF's work in paediatric FH screening, the Prague Declaration, the Brussels International Declaration on Lp(a), European research collaborations and sustained engagement with policymakers, she highlighted the role of patient advocacy in connecting scientific evidence, public health priorities and real-world needs.
The central message was clear: patients are not only beneficiaries of better policies. They are partners in shaping them and in making sure they translate into meaningful improvements in people's lives.
For FHEF, the Lipid School was also an opportunity for Ambassadors to learn from leading experts, explore the latest science across lipidology and cardiometabolic health, and build relationships with clinicians, researchers and fellow advocates. Their participation required courage, preparation and commitment, while offering invaluable opportunities for mutual learning. Patient Ambassadors are experts in their lived experience, and scientific meetings help strengthen their knowledge and advocacy skills, while inspiring future healthcare professionals to recognise patients as partners in care and research.
Beyond the lecture hall, the “Hunting the Silent Killer” campaign brought free cardiovascular health checks to the community of Hrvace, near Sinj. Participants and local healthcare professionals offered blood pressure and weight measurements, blood and urine tests for lipid and kidney health, ECGs, and aortic and vascular assessments. It was an opportunity to see screening and prevention in action, bringing our #KnowYourNumbers message directly to the community and demonstrating how scientific knowledge translates into practical public health initiatives.
Our sincere thanks to Prof. Ivan Pećin, Prof. Željko Reiner, the Croatian Atherosclerosis Society of the Croatian Medical Association, the Scientific and Organising Committees, the faculty, participants and local community. Above all, thank you to our FHEF Ambassadors for your courage, commitment and willingness to share your experiences, reminding us that behind every diagnosis and scientific advancement is a person and a family.
The 6th Lipid School demonstrated the value of bringing scientific expertise, lived experience, medical education and community prevention together. It created opportunities for mutual learning across conditions, disciplines and generations, while reinforcing the importance of meaningful patient involvement. We need more opportunities like this – and more Ambassadors in Action!